Amanda has been in Heaven for one year. It really seems like yesterday I last kissed her, held her hand and found myself trying to save her life the morning of May 13th 2012. There will be mass today and I appreciate all the people that have asked me about it, but for me …

Since Amanda passed away I really haven’t been able to post anymore. Mainly because I have so many things and feelings on my mind that I wouldn’t even know where to begin. Plus, this blog was about Amanda. About her days and nights, her adventures, her disease, her struggles, her happiness, her personality and so …

Just writing the title of this post was so difficult. I still can’t believe Amanda is gone. There was so much we wanted to do with her, new clothes I had just bought her, new toys, new ipad games, a trip to Disney, her 2nd birthday, many more getaways. We knew SMA was terminal, but …

Most of you must already know that Amanda passed away Sunday May 13th early in the morning. I will maybe write more about that later on when I am ready. For now I just wanted to share some videos that I uploaded for those of you who are not my facebook friends. There are many …

Thank you for your concerns and prayers for Amanda’s health. Fever seems to be mostly gone but seems like the cold is now moving to her lungs so we are needing to do treatments and lots of manual percussion to keep things moving. She is still needing oxygen specially during her sleep but she is …

Amanda has been in Heaven for one year. It really seems like yesterday I last kissed her, held her hand and found myself trying to save her life the morning of May 13th 2012. There will be mass today and I appreciate all the people that have asked me about it, but for me that’s not as important as all the lessons or journey with her taught us. I want people to remember her, your kids to remember her, because she existed and we need to know people remember her. Amanda taught us not to worry about the little things that we all worry about all the time; she gave us perspective. She struggled for every breath and sometimes we struggle because we don’t have anything to wear or something didn’t go as planned in our perfect day…really? We get upset because our kids make us really tired and we want time off…when you feel like that (and I include myself) we need to remember all the parents who have lost their child and wish they could hold them one more time. Our lives get hectic and we want to go out, do things and we forget to sit for hours and just watch our babies and kids do the smallest of things that Amanda and many kids could never do. She taught us to be better parents for our future kids and she taught us not to take life and health for granted. She also taught us that if a child is born with any disease/retardation etc its ok because you will love him/her as much and life will go on and you will learn to live with that and rejoice in the smallest of things your child can accomplish. So today, I wish everyone, me included, can count their blessings, stop complaining about the small things, and most of all give your kids a big, big hug and be happy that they are here to make your life happy and impossible sometimes

Amanda, please visit us and send us signs; we need to know from you. We love you and we always will…you are our little Angel in Heaven!

Since Amanda passed away I really haven’t been able to post anymore. Mainly because I have so many things and feelings on my mind that I wouldn’t even know where to begin. Plus, this blog was about Amanda. About her days and nights, her adventures, her disease, her struggles, her happiness, her personality and so much more that after she passed away I felt the purpose of this whole thing was gone. I figured, who cares what I have to say anymore if it is not about Amanda. But now that Amanda’s little sister is here I feel it is the perfect excuse to again share something happy with the people who read and followed Amanda (most people know Violeta is here, but maybe some don’t).

Back in April we travelled to NYC to do IVF/PGD to conceive an SMA free baby. I remember being so worried about going away and leaving Amanda. Everyone reassured me that everything was going to be ok and that Amanda was going to be well taken care of…I never doubted her care, I just worried as any parent with a child with SMA Type 1 would. When I was in NYC Amanda got sick and a few days after I came back she died. This is the reason why I don’t like it when people tell you that everything is going to be ok without any knowledge of the future; last time I heard those words my baby died! I know people say it with the best of intentions, but I just will never hear those words and not think how untrue they are.

3 days after Amanda passed away it was confirmed that I was pregnant. It was really hard to be happy and to grieve Amanda’s death at the same time…people would congratulate me and tell me sorry about Amanda. It is just two things that should not go together. At first I felt very guilty about being pregnant. I felt I left Amanda to get pregnant and then she died…I spend 15 days of her short life trying to get pregnant with a healthy baby, and I did but I lost her. With time I tried to forget all the guilty feelings I had about her death with some success. I will always feel guilty if I think about it, but I also know that I did my best to take care and love her and had I known what was going to happen I would have never left her.

I think being pregnant right away did help us deal with Amanda’s loss; it gave us something to look forward to. Something to keep my mind busy and be excited about. When we knew it was a girl I wanted her to be exactly like Amanda. Wishing this had me worried that I would be dissapointed if she wasn’t. I also wondered how would I be able to love someone as much as I loved her. But last Tuesday when Violeta was born all my fears about her went away. I love her so much that I never want to leave her side. I want to cuddle her, feed her, watch her sleep, sing to her….I guess someone has a new problem now! But what a great problem to have! I do get sad that Amanda is not here to meet her little sister and that Violeta will never meet Amanda. But we will make sure she knows about her and I will show her pictures and videos of her sister. Missing Amanda will never get easier. Sharing her pictures and life helps me keep her memory alive.

So, Violet was the perfect excuse to write another post and here she is! Btw, I think she does look a little bit like Amanda…either way, she is perfect!

Just writing the title of this post was so difficult. I still can’t believe Amanda is gone. There was so much we wanted to do with her, new clothes I had just bought her, new toys, new ipad games, a trip to Disney, her 2nd birthday, many more getaways. We knew SMA was terminal, but we did not expect her to go this soon. On the morning of Sunday May 13th I woke up at around 6am to the sound of Amanda’s nurse suctioning her, I immediately went to her room and the nurse told me she had a lot of secretions in her lungs and we started her respiratory therapy right away. I went to our room and told Juandi Amanda was in bad shape. Since she had been sick we had to do cough assist and put bipap while suctioning, remove bipap do cough assist and place bipap again for suctioning always with oxygen. If we didn’t put bipap on she would just stop breathing. We did the first round of coughs and put bipap on with oxygen to start percussion, she was around 88 and then started to drop fast. Nurse started ambu with oxygen (this is what had always brought her back in the past) but she still kept dropping, we did coughs and suctioned with bipap but there was no response, nurse did CPR while I bagged her, her monitors stopped working because she was becoming cold, I grabbed another monitor and placed it in her finger but it worked on and off. At some point we called an ambulance. I held her head and sang to her trying to make her come back. After about an hour of struggles paramedics arrived. They tried more of the same and tried to give her adrenaline but couldn’t find a vein. They were thinking about intubating but we called Amanda’s pediatrician and he said that after being with no oxygen for such a long time her brain had probably suffered and we decided not to intubate. We realized there was nothing else to do. I held her and rocked her for a long time. Then we put her in her bed, dressed her, prayed and asked everyone to come say their last goodbyes. We put her in her stroller and my brother and sister in law drove her in her van to the crematory.

Since her diagnosis we had been training and preparing ourselves for all the difficult moments we thought would come. We had talked about intubations, about trachs, about bipap 24/7, about morphine when the time came…and we are shocked that none of that happened. I feel like all that preparation, all that training for nothing; we couldn’t save her. I feel like we failed at her first real sickness. We knew what we had to do, and apparently we didn’t do it right. There are so many things that are constantly on my mind about the day she passed. I wonder if I should have taken her to the hospital the night before, if I should have done more cough assist when she was struggling, if I should have called an ambulance faster. I wish I had no regrets about how she passed away but no matter how hard I try all I really think is had we done things differently she would still be here with us. I don’t always believe that God decides when each person goes to Heaven, and this is one moment where I don’t think God wanted her to go; it just happened and we could have changed that.

During April and May I had been traveling back and forth for IVF/PGD. I feel guilty that I left Amanda for so many days and I wonder if her sadness contributed to her getting sick. I also regret not having spent all of her last days with her. I feel like in trying to have another child we forgot about the one we had and ended up losing her. I will be happy to welcome more children to our family, but that doesn’t mean I will feel better about losing Amanda, because one child will never replace another. I liked my life with Amanda and I love the things we did together; I loved to hold her arms and legs and dance with her, I loved to hang her arms from slings and help her play with the Ipad or to paint, I loved bathing her and putting her little duck in her hand and watch as she tried to move it, I loved carrying her from the bath to the bed and watching her happy face as she looked at me, I loved holding and cuddling her for as long as I wanted, I loved to sleep with her in the same bed, I loved to swing with her, I loved asking her to give me a kiss and put my cheek against her lips and watch her smile…and it kills me that I will never be able to do any of that with my future children because they will not have SMA and they will never be Amanda.

Since Amanda’s diagnosis we have been in contact with hundreds of families whose SMA Type 1s children live to be 10+ years. I don’t think we expected Amanda to live that long, but each day we became more convinced that she would still make it to many more days. But the cruel reality is that most SMA children still die before the age of 2, even with all the machines, all the training and all the intervention…it happened to us. I hate SMA and I hate that Amanda fell into the typical SMA statistic and died before 2. We’ve always known Amanda was weaker than most but we still had hopes.

I also try to be positive and think that she is now in Heaven free from SMA. It gives me some comfort to know that she never went through painful things in her life, that she left a baby unaware of her limitations; she left a happy baby. She was very happy here and was showered with love but I have to keep thinking that she must be happier and better now. We are just very sad that she is not here with us. The last time we saw her body before she was cremated Monday morning she looked so peaceful with no machines, no bipap mask and nothing alarming. I told her she had her bunny, her pacifier and that she could now rest (that’s what I told her every night, in addition to see you tomorrow). I also asked her to please come visit us and send us signs that she was still around. She was cremated just like all her nurses and us had prepped her before they took her body Sunday afternoon, with her purple dress, her paci, her bunny, her bow and her blankets. Our home feels empty and quiet and looking at her room without seeing her is so hard…and realizing I will never see or touch her again is even harder. All I want is to hold her and to think that I need to wait 50+ years is just too much time.

Even with all these guilty feelings and regrets I am sure we were the best parents Amanda could have. We gave her everything from love to experiences and I am so glad I have pictures and videos that will keep her memory alive forever.

Thank you again for all your messages and to our friends and family who are keeping us very busy distracting us.

Day before she passed. Fell asleep during therapy.

Ready for bed the night before she passed. I was so happy she was doing good.

Last picture I took of her. Last book I read her before going to sleep. Loved to put her little hand on my knee and feel her fingers moving.

Most of you must already know that Amanda passed away Sunday May 13th early in the morning. I will maybe write more about that later on when I am ready. For now I just wanted to share some videos that I uploaded for those of you who are not my facebook friends. There are many more videos that I haven’t uploaded but I will. Not seeing her is really hard, but watching these videos over and over again bring us closer to her. Hope you enjoy them as much as we do.

We also want to thank everyone for their kind messages, we have been reading them. With her passing I realized that without meaning to do so Amanda touched many lives in a very positive way. Thank you for keeping our family in our prayers, we definitely need the extra strength.

Thank you for your concerns and prayers for Amanda’s health. Fever seems to be mostly gone but seems like the cold is now moving to her lungs so we are needing to do treatments and lots of manual percussion to keep things moving. She is still needing oxygen specially during her sleep but she is in good spirits. This is a picture of just a few minutes ago, she fell asleep during therapy so we are letting her rest to continue later.

Amanda has been having high heart rate and tons of secretions since last Thursday but it wasn’t until Monday that she developed a fever and thicker secretions. She had a tough Monday and Tuesday and still has a fever but yesterday and today have been a little bit better. She is needing some oxygen at night and during her respiratory therapies. We have had to change her schedule to do breathing treatments every 4 hours, day and night. The last 2 nights she didn’t need treatments and she was able to rest a little bit more. She is taking antibiotics, tylenol and cataflan and is in her Bipap 24/7. This is the first time she has a significant cold and fever (Last year she had a mild cold) for such a long time and we were freaking out, but she is pulling through pretty well.

We are spoiling her more than ever and she has been receiving lots of love from her grandparents, uncles, cousins, nurses, nanny and of course us! The secretions are clearer and have lessened, and even though she still has a high fever she is in much better spirits…we think we are almost getting through this. This has been scary, but then I think about other SMA kids who get RSV or really bad colds and end up hospitalized and intubated and my heart stops. I know that can happen to Amanda any time and it is a life threatening situation that is always in the back of my mind. But now, she seems to be doing ok, let’s hope everything stays under control

This Easter I wanted to do something special with Amanda as last year she was only 8 months old and we did nothing Easter related…she still doesn’t know what’s going on but she does enjoy much more activities. Actually, last Easter I was sad I didn’t do any Easter stuff as I feared she wouldn’t live to see another Easter, but she did! I found the perfect egg painting kit for her–it literally seemed like it was made for her–with painting rolls that she could hold and move on her own. Teacher Maecy came over and we all had a blast painting eggs and putting stickers on them. I had emptied the eggs so they were light enough for her to hold (sticky paint also helped her hold them ).

Holding my Easter eggs

That night we had some stickers left overs so we filled out a page from her art book. She was really entertained.

Ballerina Stickers!

Over Easter weekend we went to Buenaventura and did all the usual. Pool (this time we went to a new pool), zoo, hotel pool, walk, touch the piano and movies–we got Tangled for her and it’s actually a great movie, I have yet to see the end and I can’t wait. This time we also got to try the new swings they installed in a park. They were awesome for us as I could hold her and swing for a long time without straining my back and neck. She loved it and almost fell asleep As you might have seen on facebook we had an amazing photoshoot with Martha Bravo…the pictures are great and we are so happy to have beautiful memories captured in beautiful pictures with our princess. We had a really good Easter

Over the last few days Amanda has attended two birthday parties. She gets invited to lots and lots of birthday parties and as much as I would love to take her everywhere we still need to be cautious with public places and sick people around her, and we also need to think about how accessible the place is before adventuring. This time she went to Valentina’s 1st birthday party–Valentina is Amanda’s first cousin and is only 7 months younger than her. Valentina says Amanda’s name and calls her whenever she comes to our home or sees her from a distance. She also went to a Pau’s and Charlie’s Circus Birthday Party where she had lots of fun.

With Valentina's Cake

Looking good.

With the birthday boy and girl...and their mommies

Juanmi and my possible mother-in-law

Posing!

This Saturday Amanda ran a lot of errands First we went for lunch, where she was asleep for the most part, then we went to Felix where she got 3 DVDs and a scrapbook for her art projects . Then we also went to GDP to get stuff for Easter, only it was too crowded and she stayed in one place while I picked something out. I wanted to avoid dealing with real eggs, but I guess the old way it’s still the way to do it. I got her a bunny but will think about the eggs . Finally, we headed to the ER where her pediatrician drew blood from her artery because her veins did not work last Thursday . She wasn’t too happy but after a few snuggles and Nemo she forgot all about it.

Ready to go shopping!

Loving lipstick!

I also wanted to update on Amanda. Even though she does not have a cold or any medical issues other than the SMA, she has some bad moments once in a while. This past Friday as I had just left home her nurse called me to come back–she had turned pale again. When I arrived she looked as if nothing had happened. These episodes come and go, but they make it really hard to leave her because I fear that one of them might be fatal. As careful as we are with her, this things can always happen.

SMA has been progressing and we have noticed that Amanda can no longer smile. She tweaks her lips a bit and her eyes sparkle, and I know she is smiling but her smile is no longer there. We always knew this was something that could happen but we really hoped it didn’t, or at least we hoped it didn’t happen so soon. This has been really hard to realize and it breaks my heart…seeing her smile brightened my day. It is the toughest thing she has lost so far and it really hurts us. The more I think about it, the more it hurts, so, I try really hard to not think about it. I wanted to write this, not to have a pity party, but for everyone who gets to see and interact with her to know it. If you are speaking to her or showing her something, don’t give up because you don’t see her smile. Remember her brain is 100% healthy and she enjoys everything a 1.5 year old does, so continue to interact with her even if you don’t see her smile, because in her heart, she is smiling.

Since last post there has been a lot going on, good and bad, and I have been very very busy and most of all tired. Amanda’s nanny had knee surgery and will take a month and a half off; it’s only been 2 weeks and I am already missing her and her help so much! The nurses we’ve had since Amanda was 5-6 months are helping us a lot during the day, and this helps a lot, but Amanda wakes up almost every night needing repositioning or just cuddles and the sleepless nights keep adding up.

Last week while one of Amanda’s newest nurses was here we went to our building park (I almost stayed to rest but since it was a new nurse I decided to go) and while Amanda was on Bipap I started to notice that she was crying, then I looked at her pulse oximeter and her O2 was at 91-92; my first thought was that it was giving an incorrect reading–Amanda never desaturates on Bipap, but, her numbers kept dropping. The nurse suctioned and asked me for the ambu bag…these nurses are well-trained and know what to do FAST, I wasn’t sure about removing the Bipap but she told me to do so and turn on the O2. At this point Amanda was pale and her saturation was in the 70s. She gave Amanda a few breaths with the ambu until her numbers came back up. We put Bipap back on and she suctioned again and lots of secretions came out. These kinds of things hit hard; while everything was happening I kept thinking, is this it? Is this her last breath? It is always shocking and nerve-wracking to see Amanda stop breathing and turn pale/blue. When she recovered my mind was going crazy looking for answers to why this happened. Maybe her head wasn’t where it was supposed to be, maybe having her play in a certain position caused secretions to build up, maybe her Bipap settings need to be checked, maybe she is weaker, maybe, maybe, maybe. The truth is, it is a combination of everything and most likely Amanda getting weaker every day. In general, Amanda is not tolerating much time off her Bipap. She doesn’t like to play without her Bipap on, and sometimes when she is off Bipap she doesn’t look happy. Bathing her has become more difficult as she keeps choking and needing suction and Bipap. SMA is progressing fast and I hate watching it taking over my baby without nothing to stop it. We knew this would happen, but it is never easy. After a few days of fighting tears there is nothing else to do but to carry on…

Right before going to the social area...

That was the bad, so, the good: remember how Amanda didn’t like to paint? Well, maybe it was because I couldn’t find a way to make her do it independently. With some tips from other SMA families I was able to get her to paint and she loves it! Here’s a video (she’s better than what the video shows but since I was also holding the camera I didn’t position the paper the right way). I got her new markers that make it even easier for her to paint and she is loving it!

Focus, focus...

End result! Grandma won (demanded really) my first work of art!

We also watched Tinkerbell together (daddy didn’t really watch he fell asleep) in the living room and this week with Teacher Maecy Amanda had lots of fun!

Amanda got her first haircut. Her hair wasn’t really long but I am a believer that if you want it to grow you need to trim it, plus it was pretty uneven in some places. She behaved really well through the whole process and the end result is super cute. She looks a little bit younger…I am such a nostalgic person and I miss baby Amanda so much, so the younger she looks the better for me

Thanks to ML's expert hands for my haircut!!

Monday Amanda and me went to music class for the first time (www.musictogether.com). I was a little bit nervous wondering if Amanda would like it or hate it. I was also a bit worried about kids asking questions with complicated answers, or people staring, but all the other moms knew about Amanda and that she would be part of the class and everyone just carried on like I was just any mom with a regular baby. Amanda she absolutely loved it and I think the more we go the more she will know the songs, the instruments, the other children and make the most out of of it.

All dressed up for class

Maracas Time!

This week we tried Amanda on a stander for the first time. Amanda’s therapist sits and stands her Monday to Friday for a couple of minutes. To sit, he just holds her from under her arms and then stabilizes her head with a pillow and removes his hands from under her arms. To stand her he holds her from under her arms while I hold her butt with one hand and straighten her knees with the other. She sits for about 3-5 minutes and stands for about 2 minutes every day…if she is stable. Sitting and standing are part of everyone’s lives and not doing so can add future complications to Amanda’s already fragile health. We do it to prevent low bone density and painful contactures, plus it gives her a more real perspective of life and most important, she enjoys it

The stander we trialed isn’t ours, but we wanted to see if it worked for Amanda. It didn’t so we are in the process to getting her one that is known to work well for kids with SMA Type 1. We stood her in this one for less than a minute and she was happy during the fitting process.

This is how I sit with my therapist.

And this is how I stand. I am much more taller now, this was 3 months ago.